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Eagle Syndrome - Online Support Group

More Questions, ES, TN, GN, CRPS, etc


#1

Jules, I think I should ask you how to send this out to everyone. I’m sorry to bother only you.
I am four weeks post ES surgery extraorally on only the left side. Recovery is going slowly. I’m wondering if anyone has had this surgery and then had the weird spasm and cringing pain in the jaw/tastebud area on that side. It hits me so hard tears come to my eyes and my ear hurts crazy.
I also have the constant aching/painful TN, GN, glossopharyngeal nerve, and nervus intermedius entrapment. The surgeon is suggesting microvascular decompression for these problems. Has anyone had all this and the decompression surgery and has it helped? I’m new to this site and am not sure how to get answers.
One other question is has anyone been diagnosed with CRPS (RSD) in their face, neck or ear, throat? That is also something affecting me and doctors bringing up that it will get worse for me. I’m very appreciative for anyone who would want to comment on their experiences. Thank you very much.


made this topic public #2

#3

Hi Patti,
Sorry to hear that the surgery hasn’t helped, and that you’re getting worse…
I’ve made your message/ questions open to the forum for you. (To ask an open question to the forum, you go on the Home page, then you click on the tap on the right hand side of the page which says ‘create a new topic+’ and it will open a box to ask your question and start a new topic)
Firstly, the spasm pain you describe in the jaw and ear sounds a bit like First Bite syndrome- does it happen when you’re thinking about food/ first start eating? It’s quite common post-surgery as the nerves are inflamed, and is thought to be disruption to the nerves going to the parotid area, resulting in hypersensitivity to the salivary gland cells… basically like a cramping. If you google it you can find out more. But it usually eases off as nerves heal more- I get it only occasionally now and am a year post-surgery.
I’ve not heard of anyone going on to have decompression surgery for nerves after Eagles surgery- only one I can think of was the opposite way round- she had the MVD which didn’t help at all, and then had to have ES surgery, but she’s not been on the site for a long time, so don’t know how she is now. Ben’s Friends has a really helpful Facial Pain group with good info about GPN and TN, and lots of info in their discussions about surgical options- they know far more about it, so I suggest you either join or just take a look: http://www.livingwithfacialpain.org/
Again, I can’t think of anyone mentioning CRPS either - here’s a link for anyone wanting to look that up
http://rsds.org/telltale-signs-and-symptoms-of-crpsrsd/
I’ve done a quick search on the site search, but it doesn’t come up with anything. (To search through old discussions, you can click on the search/ magnifying glass icon on the top right of the page)
Sorry I can’t help you any more! But thinking of you, and sending you a hug, hope that you get some answers soon…


#4

Thank you, Jules, for your help again. I appreciate the info as I am new. Yes, when I think of food or start eating, if I cry, it is such an intense cramping pain spasm in my jaw and ear. Now I know there is a name to it, anyway, First Bite syndrome. I have CRPS (RSD) in other places on my body and the docs are saying anything I do with my face will make it spread there also. One doc says no, you can’t get it in your face. That’s why I was asking. It’s kind of rare, so they say. Thank you for the tips on how to search discussions and starting topics. Even though I’ve been in pain a long time this is all new to me of so many cranial nerves being entrapped. As a general summation, as you have been on here for years, does anything really help? I can’t even say which pain is worse but the ear has to be near the top of the list.
Thank you for any input!


#5

There’ve been a few discussions about pain relief, and there’s some advice in the Newbies Guide ( ES Information- Treatment: Pain Relief )
Not sure what you’ve tried- there’s some medications which can help with nerve type pain, like Gabapentin, Neurontin, or Amitriptyline (which I take, it helps me) Sometimes it can take a while to experiment with different ones/ combinations to get pain relief. If none of that works, Snappleofdiscord suggested trying lidocaine patches which she stuck on the skin over the worst areas. Some people have tried acupuncture or seen a chiropractor although you need to be careful with that one as if they don’t understand ES they could even fracture the styloid.
For the first bite I don’t think there’s anything which helps with the pain… just a matter of being patient and hopefully it’ll go. If you find there’s certain foods which make it worse obviously it might be worth avoiding them…
Hope this helps a bit.


#6

The Ben’s Friends facial pain group would have more info (and probably more up to date!) about pain relief.


#7

Thank you so much for your help. I have visited the websites you mention and have been reading up on all this stuff. I unfortunately have tried many medications. Besides ones that just didn’t work or made me want to commit suicide, I am maxed out on Gabapentin and I could maybe increase the Amitriptyline a little, and Norco. I have been on these meds for seven to ten years. They’ve tried pain patches but those make me sick. I’ve tried pain creams from a special formulary but had a reaction to those on my skin. My ES surgeon today actually said he would not do gamma knife for the trigeminal aspects because that is not successful for a long period of time and usually requires multiple procedures. He is setting me up for MVD in July-ish. I don’t know if I can hold out that long. Things just keep getting worse. I almost get more depressed the more I read. The information you directed me to about the GPN sounds just like what I experience besides my ear, face, teeth, lips, etc. that I feel. It’s crazy! I really do like the surgeon I have, Dr. Konstantin Slavin. He co-authored an article on Eagle Syndrome and had experience for that.
Anyway, have a very nice day and I appreciate being able to relate to all these people (my family thinks I’m crazy or a raving maniac. I could jump out of my skin.). It does help me to see that I’m not crazy or alone. So grateful for you …


#8

Hi Patti. I have some information about Dr Slavin I’d like to share with you. I’ll do a private message to you.


#9

It does sound awful, I feel for you, and wish there was more we could help with. Sending you a hug…